News and views on autism research and other musings. Sometimes uncomfortable but rooted in peer-reviewed scientific research.

Monday, 9 September 2013

Measuring autism: ATEC rising?

Throughout many of my posts talking about autism research and in particular, the plethora of research suggesting that product A or diet B or drug C might impact on presentation, one important issue has surfaced again and again: how do we measure autism, or more specifically, how do we measure change in the presentation of autism?

Measuring up? @ Wikipedia

A couple of years back (yes, it's been that long!) I posted about assessing change in autism. With what I thought was a great David Bowie link - ch-ch-changes - I talked about how autism research really needed to get its act together when it came to devising a comprehensive and open-access tool which could be universally adopted to assess interventions.

Importantly too, a tool to assess across different interventions to pick out (a) likely important interventions, (b) start to work on those all-important responders and non-responders groupings which one would expect from a heterogeneous condition(s) like the autisms and (c) provide a picture of how autism ages and the ebbs and flows of symptoms as a result of factors like maturation or even comorbidity.

The ATEC is a bit of rising star in the autism research assessment world in recent years. In my previous changes post, I referenced the very respectable paper by Magiati and colleagues** (see the authorship list) and their conclusion: "This study provides some preliminary evidence of the ATEC's potential value for monitoring progress of children with ASD over time". That is, bearing in mind the quite small participant group (N=22). Subsequently, the ATEC also seems to have made it across another language too***.

The ATEC has the advantage of being parent-administered and freely available without training. I appreciate that when one looks at the types of study which have used the ATEC to date, one might get the sense that the type of research is not exactly 'mainstream' when it comes to it's use (see here), but please dear readers, refrain from making any snap judgements about the potential of the instrument on that basis.

The Geier paper is open-access and actually pretty easy-going to read. The main findings:

There was a significant correlation between total scores on the ATEC and CARS. That finding was based on CARS being administered first by one of the authors "formally trained in the administration of the CARS" and then "the participant's parent completed at ATEC form". In-between the professional and parents were not privy to the "scores generated from their respective completed tests".

Specific domains of the two instruments also seemed to correlate well, particularly when it came to the sensory/cognitive awareness domain.

The addition of items related to health/physical behaviour as part of the ATEC was an added bonus bearing in mind how much attention is starting to turn towards some of these comorbidities in relation to autism (see here).

Again, the Geier study was relatively small in terms of participant numbers (N=56) and as the authors pointed out, this was a snapshot study looking at comparing the instruments at one single time point rather than using different times. I'm also minded to bring into the conversation the paper by Ben-Sasson and colleagues**** at this point, and their suggestion that mums and dads don't always say the same things when it comes to the reporting of the presentation of autism. A variable which perhaps needs more investigation with regards to any parent-report measure methinks.

Still, I'm not going to take anything away from the recent results and the 'not bad' report for ATEC. Indeed, in these times of austerity and dwindling resources, combined with the increasingly important point that parents are the experts on their own children (see here and here), the addition of ATEC as a free and relatively resource-friendly instrument must be seen as a bonus to any future study.

Even I'm thinking very seriously about adding it to the list in my future work...

ABOUT AUTISM SPECTRUM CONDITIONS

Autism or autism spectrum conditions describe several presentations characterised by core issues with social affect and stereotyped or repetitive actions. Diagnosis is made by observation and analysis of developmental history. These are heterogeneous conditions which can carry various co-morbidities and whilst described as life-long are affected by age and maturation. Autism means different things to different people. To some it means a need for life-long support. To others it is part of the varied tapestry of humanity. To all it means a need to foster a welcoming society with appropriate support and opportunities.